Welcome to Module 5, Session 1

Caregiver Support for Understanding Caregiver Grief

Watch: “Intro to Understanding Grief”

Introducing strategies to help people understand and cope with caregiver grief.

There are overwhelming losses and grief associated with diseases like Alzheimer’s and Parkinson’s. Caregivers often grieve numerous losses over long periods of time before a loved one dies. The grieving process after death is different.

Watch: “Madelyn Grieves”

Caregiver Speaker Elaine Sanchez shares a story from her book, “Letters from Madelyn” to help caregivers understand the process of Preparatory Grief.

Caregivers go through many stages of grief as they witness the steady decline of a loved one who’s had a stroke or is suffering with Alzheimer’s, Parkinson’s other types of progressive and degenerative diseases.

Elaine K Sanchez, helps caregivers understand that Preparatory Grief requires continual adjustments to ongoing changes, and that this process is quite different from grief after death.

This is the second of four videos about understanding and coping with grief on CaregiverHelp.com.

Download Workbook PDF

Watch: “Grief: Is There No End to This?”

Strategies for helping caregivers understand and cope with Preparatory Grief.

Strategies for helping caregivers understand and cope with Preparatory Grief, which is the process they go through while caring for someone who has a progressive and degenerative disease.
This type of grief is different from the grief process after death in that it requires continual adjustments to ongoing losses and changes.

Caregivers grieve the losses that have already occurred. They grieve the loss of the life they had expected to have, and they grieve the losses they anticipate are still ahead.

This is the third in a series of four videos in the Understanding Grief module on Caregiver Help’s video-based support program.

Watch: “Goodbye Dear Jack”

It’s important to remember that healthcare workers develop deep attachments to the people in their care, and that they experience grief when a resident dies.

Elaine Sanchez shares a story about a nurse’s grief from the journal of Dorothy Tucker

Caregiver Speaker, Elaine K Sanchez, www.EKSanchez.com, shares a real-life story about the impact the death of an old, lonely man has on the staff of professional caregivers in a nursing home. The way the people who cared for Jack responded to his death illustrates that sometimes the relationships between staff members and residents can become closer than family.

Watch: “Lila Mae and the Difficult Daughter”

The evolving relationship between Lila Mae, her daughter and the healthcare staff.

Elaine Sanchez talks about the importance of relationships between family members and nursing facility staff

Caregiver Speaker, Elaine K Sanchez, www.EKSanchez.com, shares a story from the journal of Dorothy Tucker, a nurse who worked in nursing homes and on dementia wards for 30 years.

The evolving relationship between Lila Mae, her daughter and the healthcare staff provides insights into the stress experienced by family members when they put aging parents into a nursing home and how deep and meaningful nurse patient relationships can become. It also illustrates how much the resident benefits when family members and staff can overcome their differences and learn to work together.

Watch: “An Imposter in Lila Mae’s Room”

Elaine Sanchez shares a story about a nurse’s grief and an imposter in Lila Mae’s room.

Watch: “Grief After Death”

How it’s possible to go on living after someone your love dies.

The process of grieving the loss of a loved one is complicated. There is no Richter Scale for measuring the depth of a person’s loss or pain. It doesn’t matter whether you’ve lost a baby or buried a spouse, you will hurt as much as it is humanly possible to hurt.

Understanding the process won’t make the pain go away, but it can make it a little more manageable. This is the final video in the Understanding Caregiver Grief module on CaregiverHelp.com. It offers strategies on how people can honor the memory of their loved one and provides insights on how to release their role as a caregiver after a loved one has died.

Understanding and Coping with Caregiver Grief

Caregiver grief is complicated process that starts long before a loved one dies. It is called Preparatory Grief, and it’s what we experience as we have to adapt and adjust to the ongoing losses and changes that occur as a result of a progressive and degenerative disease. It’s a different process from the grief process we go through after a loved one dies.

There’s no way to measure which type of grief is more difficult, because whether you are grieving the gradual and continual losses that occur over an extended period of time, or you’re grieving a loved one’s actual death, you will hurt as much as it is humanly possible to hurt.

My mother often said, “My husband died on October 30, 1993. We just haven’t gotten around to burying him yet.” She believed that when a person was caring for a sick husband or wife, it can feel as if you’ve been alone for the same number of years that person was sick.

It’s not unusual for persons experiencing Preparatory Grief to also experience physical ailments such as:

Difficulty sleeping, lack of energy, irritability

Change in appetite: weight gain or loss

Physical ailments such as headaches, stomachaches, intestinal problems, back and shoulder pain

Many caregivers also struggle with feelings of denial, anger, guilt and sadness before reaching a point of acceptance.

When People are in Denial They Tend to:

Not see the loved one’s condition realistically

Hope that changes will not be progressive or permanent

Resist stepping up to a new level of appropriate care

They experience Anger Toward:

Their care receiver and the disease

The medical community

Friends and family members who don’t offer help or support

They Feel Guilty When They:

Have negative thoughts and feelings toward the care receiver

Get impatient with their care receiver and lose their tempers

Wish their loved one’s suffering would end

They Feel Sad About:

The loss of their former life

All of the things their loved one is missing out on as his/her illness progresses

A future that looks a very different from what they had planned

Reaching a Point of Acceptance is not easy. It takes time as well as a lot of mental and emotional effort. It helps to realize that:

It is difficult to maintain balance in a constantly changing situation

You didn’t cause your loved one’s illness, and you cannot control it, change it or fix it

You can experience personal, emotional, and spiritual growth while caring for a someone who is terminally ill

How you cope will be different than anyone else, depending on:

Your relationship with your care receiver before the illness

The severity and duration of the illness

What other things are going on in your life, including your health, family, work, and friends

How you cope with loss and change

When a loved one stops acting lovable, the caregiver’s stress increases

If you witness changes in your loved one’s personality as a disease progresses, you might find the following suggestions will help you manage your feelings of frustration:

Separate the disease from the person. Pain and dementia are two factors that can dramatically alter a person’s behavior. When someone who has always been cheerful and optimistic is suffering with chronic pain, it isn’t unusual for that person to become demanding, disagreeable and difficult to please. Stroke survivors, persons with Alzheimer’s and other dementia-related diseases frequently become stubborn and combative.Talk to your care receiver’s doctor to find out if the challenging behavior is typically associated with the disease. If it is, then try blaming the disease. It will be easier for both of you if you can be angry at the disease rather than your loved one.

Focus on a happy memory. Try to remember how you felt when you shared a particularly good experience with your care receiver. Then when you’re having a bad day and you’re feeling angry, upset, or sad, pull that memory out and try to replace your current negative mental energy with the positive feelings you recall from that particular event.If you didn’t have a good relationship, and if you don’t have a lot of happy memories from which you can draw, then think of a time that your care receiver presented you with a difficult challenge that you handled well. Congratulate yourself for being a good person and for doing the right thing.

Meet your loved one where he or she is right now. My friend Dorothy Tucker said, “As a nurse on an Alzheimer’s unit, I never felt sad about how the resident had changed. I never mourned who they had been 10 or 15 years earlier. I just loved them for who they were when I was with them.”

Hold on to precious memories – even if Alzheimer’s has stolen all of your loved one’s memories, you can hold on to the experiences that made your relationship special for both of you. If you can blame the disease rather than your care receiver, it may make the process a little less painful.

Join a support group. People who have never been a caregiver simply cannot understand the physical demands or identify with the emotional stress involved. A caregiver support group can provide you with a safe place to uncork your emotions and express everything you are feeling. There will be other people there who will identify with your experiences and won’t judge you harshly for having negative feelings. Giving yourself permission to be human will relieve a lot of pressure.

Understand that your path to healing is totally unique. Losing someone you love creates an aching, gaping hole in your heart. This emotional pain can be as intense as any physical wound. Accept that no one else has the same relationship with your loved one as you do, and it will be impossible for them to every fully understand your loss or your sorrow.

Although there are no shortcuts or one-size-fits all solutions to going through Preparatory Grief, the process might be a little less stressful if you can cut yourself some slack. Recognize that caregiving one of the most difficult jobs you will ever do. In order to survive the emotional stress, you will need to make self-care a priority.

If you can accept that self-care is not selfish, and if you will take care of your body and pay attention to your mental, emotional and spiritual needs, you will be in a better position to help your loved one now. And then, when your role as a caregiver comes to an end, you will go through a different type of grief, and eventually you will come to a place of acceptance and peace. At that point you will be in a position to create a well-deserved new life for yourself beyond caregiving.

To read Elaine’s article about coping with grief after death, click on this link: Beyond Caregiving – Moving Through Grief to Gratitude